Press Release: ME Action, September12, 2016. Last week, Queen Mary University of London (QMUL) released data from its controversial PACE study on myalgic encephalomyelitis / chronic fatigue syndrome. The data release came after five years of pressure from patients and scientists who questioned the study’s claim that graded exercise and cognitive behavioral therapy were effective treatments for patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).

The PACE trial has attracted mounting criticism in recent months from scientists, including a group of over 40 who said in an open letter to The Lancet, the journal that published the original paper that PACE’s flaws “have no place in published research.” In August, a UK tribunal ordered the release. The following experts and advocates in the US and the UK responded to the release of the data:

Professor Jonathan Edwards of University College London, one of the letter’s signatories said:

“The new analysis of the PACE trial appears to confirm the consensus view that CBT and graded exercise therapy were associated with a mild placebo effect.”

“Let’s be clear. These findings are really much worse than those presented in published, ‘peer-reviewed’ papers“If these were the best findings for $8 million, then PACE really will not survive legitimate scrutiny.”

Jennifer Brea, co-founder of #MEAction explained:

“The release of data from Queen Mary University of London’s PACE study into Myalgic Encephalomyelitis proves that graded exercise and cognitive behavioral therapy were never effect treatments for those suffering from ME. The more than 1 million people that suffer from ME in the United States need real research into the causes and potential treatment of this horrific disease and we hope that the release of this data proves once and for all that this research is long overdue.”

LA Cooper, of #MEAction Network in the United Kingdom added:

“We are thrilled with the long-awaited outcome. The only way forward to ensure we better understand this disease and discover adequate treatments is through strong, trustworthy science. We believe that the release of the data is a huge step in the right direction.”

An analysis published Wednesday by the trial’s own authors states that just 21% of patients found improvement with graded exercise, as compared to the 61% they originally reported in The Lancet. Critics think that when the data is independently analyzed, it will show that exercise has no positive benefit at all. Graded exercise is a commonly prescribed treatment for ME/CFS but many patients and researchers believe it can make symptoms worse, sometimes permanently.

A petition led by #MEAction with over 12,000 signatures was presented at the tribunal as evidence of the level of public interest in data release. Over two dozen patients’ charities in 14 countries called on PACE’s authors to release their data for independent reanalysis. But Queen Mary University spent over £200,000 on legal fees on a tribunal appeal to try to prevent the data’s release.

Based in the UK, I developed acute onset ME following a tonsillectomy and coincidental upper respiratory viral infection. Sadly, after the normal National Heath Service 'guess the diagnosis' approach, that being broad spectrum antibiotics, it was, as standart assumed to be 'all in the mind' to fit in in with popular, unproven psychiatric THEORY and low cost treatment. Consequently in went CBT, GET and a tricyclic antidepressant, with the firm belief that it was post infection depression causing my symptoms.

After six weeks, I felt so much worse with every symptoms considerably intensified, so that rather than being better, I was significantly worse. In addition, my major symptom BEFORE treatment of postural hypotension was ignored and yes, the major side effects of the antidepressant was weakness, hypotension, insomnia, in fact the best possible drug to amplify all symptoms.

Subsequently, I refused any National Health Service treatment, and have instead paid the full costs of private health care, where tests conclusively proved that the treatment given by the National Health Service as GET and antidepressant medication was the worst possible treatment that I could have been given. Now, with private medical treatment two chronic viral infections have been removed, one antibiotic abuse induced fungal infection removed, drugs given to increase my blood and pulse pressure, and tests that point towards calcium ions being uncontrolled, indicative of an immune dysfunction, with a bias towards inflammation. This, at least provides symptomatic relief, and a target for further treatment.